posted
My wife has had Lyme for two years now. It took 1 1/2 years of frustrating testing and 10 doctors to come to that conclusion. Even worse, the 2nd doc that we saw tested for Lyme, but since it was within the first six weeks of the bite, the test was inconclusive. If we would have asked for a retest we might have gotten a better result. Water under the bridge... What I would like is to hear from the spouses/loved ones of Lyme patients. We need support too...right?!!
This process has plenty of bad associated with it. There can be good however. It has certainly made me more empathetic towards ALL people that are ill. It has made me more spiritual and has forced me to truly know what is important in life. It has also made me more grateful for my own health.
Anyway, I'd love to hear from those of you who are supporting your loved ones. Good luck to all of you. My wife has seen great improvement but has a long way to go. I wish you all well. Posts: 6 | From Texas | Registered: Jul 2008
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Thank you so much for posting that! I hope many will respond.
I am not who you want to hear from as I am the one in my household who is ill.
Support is so very important and it sounds like your wife is very lucky to have you.
I know I is not easy. Keep in mind, I often feel like I am ruining the lives of my family because I am ill. This is a heavy burden to carry on top of not feeling well.
I hope you get lots of support here.
Posts: 1129 | From Maine | Registered: Feb 2008
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posted
I understand your burden that you are carrying concerning the strain that you feel that you are putting on your family. My wife also believes that she is ruining our family's life. She believes that she has essentially missed out on our kids childhood and that they have missed out on having a "functional" mom. I tell her repeatedly that none of these things are true. If anything, it has made us closer and stronger as a unit. I wonder if your family would echo that sentiment? I hope so.
Posts: 6 | From Texas | Registered: Jul 2008
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posted
Your wife is very lucky to have you support her so completely that you are posting here.
I am ill, and so are our 3 children. I make all the dr appts, get us there and somehow keep things in some kind of order.
My husband has never once gotten online here. I have to hand him articles to read, and stand there to make sure he reads it. Sometimes it is just too much for one person to handle, I could use some input from him. He is in no way stupid or incompetent. Holds down a very high powered job. I would love to know tht he took the time to do some research, wanted to talk to a dr, go over the blood work results. Something.
I hope you get what you are looking for here. I am not the person you were hoping for, but wanted you to know that I admire what you are doing for your wife.
Good luck.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am so glad to hear that there are supportive spouses out there.
we need to know that other's care about us and we have other shoulders to lean on.
that being said, this board is my shoulder....
not all spouses are that supportive.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Midway - In answer to your question - yes - my family tells me repeatedly that all is well.
My son who is 20 is probably the one that keeps me going. He sits on the floor with me and just lets me cry all over when things are bad for me.
My partner is very supportive but sometimes it is difficult for him as all the financial burden is on him. He will say this is not a problem but I feel it wearing on him.
I guess it's not easy for anyone.
Posts: 1129 | From Maine | Registered: Feb 2008
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posted
I am enjoying reading everyone's responses. What would be cool is to hear from the family members who are not infected by but are affected by Lyme. I would like to show support for them as well.
My sixth grade teacher had a favorite quote: "If you think education is expensive try ignorance." Does anyone think that that saying applies to Lyme disease? :>
Posts: 6 | From Texas | Registered: Jul 2008
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posted
You should get a copy of Pam Weintraub's new book CURE UNKNOWN. You will find great information as well as support in this book. It will also help you better understand all the issues involved with Lyme.
please go to SUPPORT; there were 1-2 posts started their for JUST YOUR REASON WHY YOU POSTED .... SUPPORT FOR "NON-LYME" SPOUSE/S.O.!
please note at end of mine about my newbie package is finally done w/complete table of contents in there; can't remember off my head if there is something like you are wanting there in my 138 pages!
but check it out, and hopefully your lyme wife might find things of interest to her.
also, when you post, would you hit ENTER MORE for shorter paragraphs for those of us who are NEURO and can't comprehend and read long paragraphs; we thank you!
check out in SUPPORT also, the top...my lyme videos compiled ... i don't know if there are any about spouses needing support or not.
if not, why not CREATE ONE and talk about the things you are going thru and what has been working well for you/spouse!
best wishes and THANK YOU FOR BEING SUPPORTIVE TO YOUR WIFE!!! there are MORE non-supportive than supportive; so you are a RARE GEM!!
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
There are a few here who are the ones in the family who don't have Lyme, but most of us are the ones with the disease. It's a good place to be no matter which side you're on.
The best thing my husband told me was that the family didn't need me for what I do, but they need me for who I am.
That made me realize that I am ruining no one's life. Everyone is learning from this ... mostly about compassion .... but also that we're all an important part of the family and contribute (the kids have had to take on a big load with doing most of the cooking/cleaning).
One day I was upset that the house was dirty .... hubby said he didn't marry me to keep his house clean.
I know it's hard on everyone involved .... the non-Lymies in the family carry the load of not only caring for the ill, but also running the household.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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You absolutly need support too!!The whole family is going through this.....
you wrote... "She believes that she has essentially missed out on our kids childhood and that they have missed out on having a "functional" mom."
years ago while in counceling....I said to the therapist that I didn't want to be this kind of mother...too sick to even read bedtime stories...help with homework....etc.... .....and I'll never forget what she said.... she said maybe you and your husband are raising strong individuals....individuals that will have compassion for others...and they will really know and feel what love and commitment is all about ...
well...my son just graduated... and he is now a Respitory Therapist...... my daughter..going to school to be a Radiology Tech. you would think with illness around them all their lives that they would want differnet careers..
That therapist was soooooo right.... Yes....my kids missed out on things....but they didn't miss out on having a mom.....
You came to the right place for support.. I hope that your wife will have better days ahead.... and I hope you also will have better days ahead..
Welcome... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
For the last couple of months when the kids would ask "Where's Mom?" We all would just smile and say "On the computer!"
Now I see one of the reasons she is always "on the computer." It really is a blessing to be connected to others in the same boat. It makes all of this seem far less lonely.
Before antibiotics my wife rated her life as a 1. At her last appointment she gave it a high 5. That is quite the jump in 7 months!
I pray for all of you and your families.
Posts: 6 | From Texas | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi Midway,
You're a good guy! My guy is also one of those that are very supportive. He reads posts here, but doesn't post himself. He might be up for pm'ing you though - if that's okay.
I do have a book suggestion for you - "Beyond Chaos - One man's journey alongside his chronically ill wife" by Greg Piburn. It is not Lyme-specific, but rather specific to all chronic illnesses, and what it is like for the healthy spouse.
It's given me great insight into what my husband goes through, and has been a very good resource for us both.
Just wanted to put that out there for you. It's on Amazon, or at any bookstore.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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I'm the healthy spouse (I hope ). This is very tough to deal with - it is not something your wife has, it is something your family has. She just happens to be the host of the little buggers.
It is one scary roller coaster ride (I used to like roller coasters ). We have had some tough times, but at this point I believe we are closer than we ever have been. My wife has been sick for at least 3 years, probably longer.
Lymenet is a great place. I don't post much, but I read all the time. The more you learn, the easier it is to communicate with your wife.
If you ever need to talk, just shoot me a PM. Anything I can do to help, I will. We are all kind of one big family here.
Dr. F in NJ has just put my wife on Minocycline in addition to the IV Rocphein and Zithro (orally) We'll see what effect this has. She has plateaued recently so I hope this helps.
Posts: 6 | From Texas | Registered: Jul 2008
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posted
I hope your wife's new added treatment goes well. Do you travel from TX to NJ?
I wish there were some sort of support group for my DH. He has picked up more slack than one person can handle. I do feel bad for him, I do. He is feeling angry and resentful and has told me I sound like a broken record when I say "I don't feel good."
I push myself well beyond limits but it isn't good enough. We have young children and I am barely getting by and he can't effectively carry the load while working full-time.
Every day I feel like a failure. I feel like my kids lost their mom. Having a not-so-great (to say the least) childhood made me want to be a great mom.
I was doing well until I got sick. Now I am a huge failure and I know there is nothing I can do about it.
I hope you find a support group because I do believe spouses need this. Their whole life has changed so much. I don't think I'd want to be on that end of the coin, either.
I wish I had your positive attitude and being able to see the good in all of this, but being sick for almost 2 years, I'm just not there yet.
My family is really struggling and I only see more impatience from my kids and husband as the days roll by. How often can they hear "I'm sorry, not today, mommy doesn't feel good."
It's not fair. It starts to get to all of us after a while.
-------------------- Junegal Posts: 18 | From East Coast | Registered: May 2008
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My husband has been sick for almost three years now and we've known about the Lyme for about one and a half years.
My husband was hit hard all at once and there were a couple of times when I didn't think he would make it. (There were also times if I didn't have the kids I don't know if I would have made it but we don't really have a choice so we just keep soldiering on.)
It took a while to get the right treatment in place but my husband is starting to make improvement.
I don't have the frequent flyer miles that some posters have but do usually check in here once a day. Feel free to pm me.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
I to no what its like when your spose is ill..My husband has been sick for 7 yrs..only 2 yrs ago we finally got a pos for lyme....he was only 55 when he had to stop working..this was a shock to me..i had to support us as well as take care of the whole household...as well as keep his Dr app. and take care of him...he has been so sick and its not his fault...he feels that everyday..i tell him we are doing fine..it could be better but we have each other and our kids & grandkids to keep us going...I never thought our retirement life would be like this...but in the past few weeks he seems to be getting stronger and has put one 7 of the 25 lbs he lost...i feed him all the good thing and i see a light at the end of that long tunnel...like everyone here it takes time but you get so mad that it had to take 5 yrs to get the right answer that you knew along....lets pray that will change soon..take care everyone and hang in there..we know we are not alone
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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). We have had some tough times, but at this point I believe we are closer than we ever have been. My wife has been sick for at least 3 years, probably longer. 
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